Category: Uncategorized

Today I saw my kidney specialist about all the strange exhaustion stuff going on. He confirmed what I sort of thought anyway, that it’s all probably a side effect of the small amount of prednisone I’m taking. This gives me hope. It means I’ll only be feeling crappy for another couple of weeks. He also wants me to tell everything to the super-special disease doctor that I’m seeing in two weeks who might have more insight.

So things are looking up. I’ve talked to work and they understand everything. I’ve seen the specialist, and he knows what’s going on and doesn’t think it’s my kidneys (yay!); and I have an appointment with the fancy disease doctor in two weeks if I’m still feeling like there’s a bowling ball on my chest and I can’t walk to the corner because I’m so tired I feel like I’m going to fall down.

I still have to have the test on Monday, which is kind of yukky, but at least it’ll rule out for-sure-for-sure that I don’t have an infection in my heart.

Because we’re much, much older than the norm (link via Gawker). Um, and we’re Canadian. Do you think that makes a difference? And what about all those 20-year-olds who got married and are now divorced, huh? Huh?

…is that I don’t feel like myself lately. My brain can’t focus, I have no energy to do anything. I keep crying because I don’t like not feeling like myself, not feeling useful, not feeling like I’m living up to my potential, whatever that might be. There are so many things I wished for when I was a kid, I think, or at least I knew to trust my instincts, that everything would be okay. That I would be okay. The worst part of all of this is losing that inner voice. The lost cry of my own personality being drowned by the disease and my seeming inability to wake up these days.

Would anyone think less of me if I took a break?

Yesterday, we were sitting backstage after the show, and I can’t remember where it came from or if JKS said it himself, but I found this incredibly inspiring:

“I’m an artist. I create the world, not the other way around.”

So that’s my approach to life and art and blogging and working and being sick and being alive and being tired and reading and thinking and everything. It’s truly my world. I’m creating it. It’s not creating me.

So I stayed home from work yesterday as per the ER doc’s instructions only to find out he never sent the order for my new test. It’s now scheduled for November 28. On top of that I never heard back from the specialist, so it seems that whatever’s in my chest can’t be all that tragic considering no one’s really taking it all that seriously.

Our friends were in town playing with Sarah Harmer at the Glenn Gould Studio. It was wonderful to get to see the show, it’s beautiful inside and truly sounds amazing. The whole evening was kind of surreal. I’m feeling so out of it that it’s hard for me to stand up for long periods of time, so I was glad it was a sit-down show. But at the same time, it’s so anti-rock that I didn’t know quite what to do with myself. Do I “woo!”? Do I “whoop!”? Can I holler? Should I dance in the aisle (um, no definitely frowned upon)?

The whole evening was full of strange callbacks to my past. Danny Michel was playing with Sarah Harmer. He used to be in this band called The Rhinos. When I was at university the couple times I saw them play I was either drunk or on acid (please don’t tell my father). The first time, we were so hammered we totally sat at the front of the very small club (The Toucan) and talked to the band through the entire set. Oh, silly girls.

The second time, they played at this strange club in Kingston (I can’t remember the name now, but maybe it was A.J.’s), and I sat on this set of stairs beside the stage. I was so high that I kept reaching through the iron bars to take their things: hats, scarves, mittens, beer, anything I could get my hands on. It was totally bizarre. They kept coming back to look for things and I had moved them, and then moved away so they had no idea what was happening. Oh, being high on acid. So silly.

So it’s strange that I have such an intimate memory of him, of his band, and he has no idea who I am, other than the girl he sort of kind of yelled at when the CBC guys gave the rest of our friends crap for smoking outside—the smoke was blowing back in on them. And I wasn’t even smoking—because girls with Wegener’s really shouldn’t be smoking, as much as they might want to.

Earlier that evening, Sarah Harmer and The Weatherthans covered Islands in the Stream, by Kenny Rogers and Dolly Parton. I listened to Kenny Rogers so much growing up at the cottage, that it made me all warm and fuzzy thinking about my grandfather, playing poker and these strange “talent shows” all the kids used to put on in the middle of the summer for our parents. Which made me think of how I grew up, what a great time I had, all the people I love and loved, and all the other things you remember from your childhood.

It could just be the meds that are making me introspective, imagining links from events today that connect me inexorably to who I was ten, fifteen, even twenty years ago. It could be that my body is so tired that the only way for me to expel my energy is through willing my brain to work despite everything that’s going on. Who knows?

Oh, but the strangest part of the evening? Danny Michel pulling a totally pimping pair of crocodile leather shoes out of his car, holding them up saying, “Check these out!” Apparently, he thinks they’re kickin’ but he’s not brave enough to wear them just yet. Then everyone finished packing up their rock gear to move on to the next part of the evening. This was the part where I went to bed and they all went out and got hammered. I hate the disease.

The best news I’ve heard today. Suck on that Dubya.

Okay, so I made an appointment with my family doctor today to see if I can find out why I’m so tired these days. I’ve been having this strange pressure in my chest that sort of feels like I’ve got the wind knocked out of me, and think that might be why I’m so tired. Annnywaaay. I see the family doctor for three fleeting seconds before she’s on the phone with Emergency (the clinic is in the hospital), and calling up my kidney specialist to tell him that I’m in her office feeling lowly.

Sooo, she sends me downstairs to the ER. And it’s exactly what you’d expect: bedlam. It’s the very last place on Earth I want to be. In fact, I can think of no place I’d actually call hell, except an emergency room at a crowded downtown Toronto hospital. I didn’t think I needed to go the ER, I just wanted to make sure I didn’t have an infection in my heart, which I’ve had before, because that’s what it kind of feels like.

I got to the ER at 11 AM. I left at 6 PM. I had blood drawn, an EKG, and myriad other tests to confirm that maybe it’s not pericarditis, but maybe it still is—because I have to go back TOMORROW for another test.

The whole point of me going to see the family doctor was the following: A) not to bother my specialist with the minor ups and downs of my health that may or may not be related to the disease; B) to determine if maybe I’m so tired because of the disease; and C) to AVOID AT ALL COSTS the ER because it’s unnecessary and, well, not a bloody emergency.

The resident was super-nice. But he has no answers. He doesn’t know if it’s the disease. He in his cutie-patootie faux-hawk and super cool brown cords can’t tell me if I’m sick because I’ve got a disease or if I’ve caught some strange viral infection. His advice? Go see my specialist ASAP. That’s actually written on my ER orders: Go see [insert name of ragdoll’s super-duper specialist here] ASAP.

There’s nothing more frustrating than feeling like you’re wasting time and precious resources. I had work to do. I have a life to lead. I have a disease to battle. None of these things can be done from a bed in the ER ward listening to the truly ill people wailing like they need a wall and dying in beds beside me.

Shakespeare via your mobile phone. Makes it even shorter and more succinct than Tom Stoppard. And is that necessarily a better thing? I don’t know. How much value do words lose when you strip them of their sentences, shorten them to the point of extinction and then pull them out of context?

Making it through an entire day of work feels almost like climbing Mount Everest. Okay, I’ve never actually climbed Mount Everest, so I’m sorry if I’m offending any true blue mountaineers out there. By the time I get home I’m flushed and semi-feverish, or at least I feel that way, totally exhausted and thinking about bed. I put on my pajamas (jogging pants, sweatshirt) and I turn on the television. So. Not. Exciting.

But tonight I had a function to go to for work. Flare magazine had a cocktail party to celebrate their year, and it was a lot of fun, despite my lack of energy. In fact, I had a My Name is Earl moment. I had forgotten to dump my business card into the buckets for the door prizes until the very last second, when Zesty pulled a fast one and dropped it in. And I won a $250 gift certificate for Yorkdale Mall! Bring on the shoes, bring them on!

Perhaps the world is being kind to me because I’m feeling so poorly lately. Who knows? But it was kind of funny.

So I am now officially puffy from the prednisone. The side effect is awkwardly called “Moon Face.” Which makes it sound so lovely. In essence, my cheeks are all puffed out and I look kind of like a chipmunk. Kind of fitting for this time of the year.

My skin has also erupted into some strange acne too. Which means, of course, that I’m washing it, using toner, using masks, anything to try and control it. This sometimes results in me picking away it for hours, squeezing things that I should honestly leave alone.

Today, my throat is super-sore, and I’ve been working from home the past few days to try and feel better. Thank goodness I’ve got an awesomely understanding boss and workplace. I couldn’t cope with it otherwise. There are some small blessings. If I was still working for the Boss From Hell, I think I would have lost it.

I went to school last night, which was fun, but too exhausting. I came home and just about collapsed on the couch. I’ve made another appointment with the doctor for Thursday to see if there’s anything they can tell me about the disease and whether or not it’s actually getting any better.

My spirits are falling, and my RRBF keeps asking me if I want the pillow. It’s kind of funny, he’s such a romantic, offering to smother me so I’m out of my misery. In jest of course, ah, the things we do for love.

It’s brutal that I’m too tired even to read. And you all know how unlike me that is…